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EDS Types

Ehlers Danlos Syndrome is a [relatively] rare genetic connective tissue disorder in which defective collagen is produced, resulting in loose joints, dislocations, fragile skin, and vascular fragility. Individuals diagnosed with EDS are diagnosed with a specific type, each with distinct symptoms and diagnostic criteria. Some types can present serious, life-threatening complications; all can be life-altering.

Vascular (previously type IV) – blood vessels and organs are prone to spontaneous rupture, which is life-threatening. Thin, translucent skin on chest and abdomen. Typically, hypermobility is limited to the fingers, but not always.

The hypermobility, classic and vascular types are the most common, while the Kyphoscoliosis, Arthrochalasis, and Dermotopraxis types are quite rare.

(The current descriptive method of labeling, which replaced the numeric classification in 1997, could be changed in the near future. While each type does have distinct characteristics, it is common for individuals to have cross-over symptoms and thus not fit perfectly into one category or another. )

There is no cure, but each symptom and complication can and should be treated.

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Comments on: "EDS Types" (5)

I am a 52yr old male with EDS hypermobily type formerly type 3 ..I am greatful for the internet these days and the ability to share information on this rare condition that I have suffered from my whole life and has learned that the things that are connected to the syndrome are vast and you kind of learn as you go and when you get to listen to others with EDS talk about their life and the symptoms they share with you and how much alike but different in our own way and have also as time as gone by that cross overs of symptoms and types can be different in each person.. I have 4 children and not all of our symptoms or abilities are exactly the same. I myself have not met another person with EDS and my age in my life. I have met 1 Marfan and 1 person who I thought had Ehlers Danlos Syndrom before but they had never been formerly diagnosed by a doctor…they have changed the grouping and types twice since I was diagnosed back in the 80’s and there was no information at all and they wanted me to be involved in the research of disorder and I declined. Meeting someone 25years later that went through that same program and her arms from all of the surgery looked really bad. As the time has gone by the pros and cons of bracing and medication has changed and its been alot of experimenting as I am going along and I wonder if I ever should tell someone who is young what all they will go through and what really to expect as the decades and years pass on your joints and bones and how much pain to expect and to get a doctor to believe you, all the depression and anxiety you go through that you learn is normal for someone who has EDS. You never know exactly when your gonna move or sneeze or do something that is gonna cause something to pop out…that you don’t know when or if that effected part is going work in the near future and that it hurts so bad. I would actually like to meet a person my age with the same problems just to compare how many different symptoms we share in common…should I tell young people what all to really expect??

Hi there!
Thanks so much for commenting – you really said a lot in your comment! As you pointed out, some things about EDS sadly stay the same through the years but, you really captured the aspect of change in your comment. Thankfully, there are changes/ improvements in understanding and education of doctors and in treatment options. They have changed the classification system and that has made labeling better over the years – they had an international meeting last year and some of us were hoping they would changed the names again to maybe address the whole issue of crossover symptoms, so there would be more accurate labeling. Didn’t happen, but it probably is about time that they update again.

The positive thing is that the experts (the few who exist) are making some progress and new doctors are learning more about EDS in medical school – your chances of ending up in a room with a doctor who actually has heard of EDS is better than it used to be – for whatever that is worth. The downside is things aren’t changing nearly fast enough and real people are really suffering with this nasty condition.

So, to answer your question about whether to tell a young person what to really expect, (and this is just my opinion, so feel free to disregard!) I would say to tread lightly. Speaking honestly about the challenges you have faced is a good thing and very likely telling them about things like pain and dislocating when you sneeze and the anxiety and depression and the arbitrary nature of the EDS body and so on will not be news to them – those are things they are probably already experiencing. In fact, it could be helpful to let them know that what they are experiencing is ‘normal’ – although it would be important to point out that everyone is different and EDS is unpredictable. The reality is that hearing someone speak honestly about the challenges of EDS can be incredibly validating and that is where your experiences are so valuable.

However, my advice would be to make sure you also convey hope – Hope that things are continually improving… Hope that there are more doctors to treat EDSers, although it is still a huge challenge… Hope that year by year we unravel the mystery of EDS and that means better options for treatment… Hope that, through the internet, EDSers have wonderful opportunities to meet and share info… Hope that, being diagnosed young, means a better outcome for the youngest generations. (That last one is the one we all cling to, I think.)

So, I guess what I am saying is that your long experience with EDS is a valuable resource for any young EDSer – but you are also in the best position to point out how things have improved and to be a cheerleader for the next generation. A newly diagnosed or a person who has EDS but is barely affected needs both honesty and hope – and you sound like you are in a position to offer both! Living with EDS is a marathon, not a sprint, and it requires a long term view – you are in a perfect place to share that sort of vision, having lived with it for so long.

[By the way, I sympathize with your wish to meet someone your own age so you could compare notes. Have you joined the EDNF message board or attended one of the yearly conferences? Those are both great opportunities to find someone your age to talk to. Depending on where you live, there very well might be a nearby support group with people who are living with the same challenges that you could meet up with. The internet has made the world a smaller place – so you just might get your wish to talk to someone your own age about EDS.]

i have ankles weak, fibro problems with my back scololios doulbl jointed hyedal hernie with gerd. balance problems all my life. i fall alot. where braces on both ankles. I have to either use my cane or walker. constantly having to go to arthrist chrio take so many medications. Pain pills . help someone.